title: Carer quality of life and experiences of health services: a cross-sectional survey across three neurological conditions.
abstract: BACKGROUND
  Neurological conditions have a substantial impact on carers, with carer well-being having been shown to be influenced by a number of demographic, patient and caregiving factors. Support given to carers can lead to better coping. This study investigated the relationship between carer well-being and experiences with health and social services.
  
  
  METHODS
  A cross-sectional survey was conducted of 1910 (37.4%) of carers of 5109 people with motor neuron disease (MND) (n=434, 54.9%), multiple sclerosis (MS) (n=721, 30.7%) and Parkinson's disease (PD) (n=755, 38.2%). Carers completed a generic health status measure (SF-12), a carer strain measure (Carer Strain Index- CSI) and a newly developed questionnaire on health and social care experiences. Data were analysed by analysis of variance with p set at <0.05.
  
  
  RESULTS
  Carer well-being was found to be compromised and differed significantly between the three conditions. Furthermore, a considerable number of carers experienced problems with aspects of health and social care, although there was no clear pattern according to the condition that was cared for. The total number of problems reported did not differ significantly between conditions but was significantly (all p<0.001) associated with carer quality of life (both physical and mental health) and strain, even when other influencing factors (demographic and caregiving variables) were corrected for. The association was particularly strong for carer strain, and less strong (but still significant) for quality of life.
  
  
  CONCLUSIONS
  The results show that carer well-being is compromised, in line with previous studies. Furthermore, the link of carer well-being to the number of problems reported suggests that minimizing problems experienced could improve carer well-being. This stresses the importance of health and social services appropriately supporting carers.
authors.affiliation: Department of Public Health, University of Oxford, Old Road Campus, Oxford OX3 7LF, UK. michele.peters@dph.ox.ac.uk
authors.forename: Michele
authors.initials: M
authors.lastname: Peters
authors.forename: Crispin
authors.initials: C
authors.lastname: Jenkinson
authors.forename: Helen
authors.initials: H
authors.lastname: Doll
authors.forename: E Diane
authors.initials: ED
authors.lastname: Playford
authors.forename: Ray
authors.initials: R
authors.lastname: Fitzpatrick
mesh_terms: D000368:Aged; D017028:Caregivers / Q000523:psychology*; D017281:Cost of Illness; D003430:Cross-Sectional Studies; D005260:Female; D006296:Health Services; D006305:Health Status Indicators; D006801:Humans; D008297:Male; D008875:Middle Aged; D016472:Motor Neuron Disease / Q000628:therapy*; D009103:Multiple Sclerosis / Q000628:therapy*; D010300:Parkinson Disease / Q000628:therapy*; D011788:Quality of Life; D012947:Social Work; D013315:Stress, Psychological